Let Me Fly

Saturday, September 27, 2014

Through my transplant journey page and my personal page I have received questions over the last 20 days since transplant. I would like to answer to the best of my ability, but some answers are not cut and dry because transplants vary person to person. I will give the best answer I possibly can. Let's begin!

Q: Krista Peterson -Will cf hurt these lungs as well?

A: CF will NOT hurt these lungs as well. Because CF is genetic and these lungs are not genetically attached to my DNA they will not be affected by the defect.

Q: Nicole Gorsuch- Can you describe how your first deep breath felt with your new lungs after you woke up? :)

A: It felt AMAZING! It was painful to take that full deep breath because of the operation. It was a hurt so good kind of feeling. It brought tears to my eyes. It felt like I could blow up a balloon in my lungs in one blow.

Q: Lynn Porter-Do you know the age you would have to be for a lung transplant and can they do them for children with Cystic Fibrosis?

A: Lung transplants are not based on age but on function or I should say lack of function in the lungs. They start to look at people for transplants when lung function numbers drop into the 30% ranges. Yes they do lung transplants on children with CF that need them.

Q: Mary Church Olson-Will your lungs last a life time? Praying they will!

A: There's no way to know for sure if they will last a life time. I have faith they will though.

Q: Ginny Hutson Miller-How long were you on the list ?

A: I was on the list for 8 1/2 months.

Q: Juanita Custer- Does a transplant 'cure' cf?? What are the chances of needing another transplant?? Having been through this, would you even do it again?? Last one.. Do you know how much you inspire people?? ;)

A: Transplant does not cure CF. Transplant is a last effort to save the life of CF'ers in lung failure. The chances of needing another transplant vary from person to person. I would also have qualify again for another if need be as well, the process starts all over again. At this point I can say if need be I would do it again. I really don't know how much I inspire people, that's honestly a hard thing for me to wrap my head around.

Q: Heather Renae Schafer - Do u have to be on anti rejection meds now for the rest of ur life??

A: Yes, I will be on anti-rejection medications for the rest of my life

Q: Deb Bendon -Will you get an opportunity to meet the donor's family?

A: I will have the opportunity to write my donor's family and they have the option to write to me as well. I plan on writing them and where the connection will go from there is up to them. I absolutely hope I have the chance to meet them some day.

Q: Lorena Holliday Justice -How has this changed your view on life? Any big plans for the future??

A: I don't think it's changed my view on life to much, I believe my outlook on life has always been pretty good. I don't have big plans for the future at this point. Right now I'm enjoying the little things that were taken from me slowly by my lung failure, such as showering, dressing, getting the mail, and those simple things without getting short of breath. As I heal and am able to do things I believe it will be the small things that matter the most to Colton as well, like riding a bike, jumping on his trampoline and swimming with him. My personal goals for the future would be to focus more on my photography and maybe go to school for that.

Q: Megan Jean -What was it like when you came to the first time and realized you had new lungs?

A: Painful and emotional. I couldn't believe that it actually happen for me. It's very surreal still. I'm so grateful and happy to be given this second chance at life at the same time incredibly sad for the family that lost their loved one. They are truly my hero for giving me the ultimate gift in what must be the worst time of their life.

Q: Karrie Hutchins -Does this mean longer life? I ask because in that video I think the kid said age 36.

A: Yes that is the hope that it will give me life for much longer than 36, I have no doubt it will give me more than I had left the way I was, I was failing fast. But there are no guarantees with transplants. So there is no way to know for sure.

Q: Taylor Eames -How does it feel to take a deep breath now?

A: It feels so great and amazing! In fact I'm still not use to it and have to remind myself that I can actually take a deep breath and have it feel good and not send me into a coughing fit.

Q: Greg Howell -Biggest difference you can feel?

A: Not coughing and getting short of breath all the time and feeling my lungs expand more than I ever remember feeling. Q: Deb Bendon -How much pain were you in right after the surgery? How long before you were walking after? Could you have visitors and how soon?A: They gave me an epidural spinal block for pain right after surgery so it was tolerable, the pain didn't come really bad until they tried to wean me off the epidural with an oral medication that didn't work. Once I found the right drug that worked for me the pain is under control and I'm rarely more than at a discomfort. I walked 3 steps from the bed to the chair the day after surgery but didn't take an actual walk until day 3. Yes I could have visitors and did have some immediately.

Q: Heather And Trevor Wood - Does this mean you no longer have cf? Will you still be on all those meds? What can you do now that you couldn't before? Just a few things I have been wondering!

A: Since CF is a genetic disease I still do have CF in the rest of my body, it just can no longer hurt my lungs. I will still take a lot of medications, but the major difference is in the time consuming vest therapy and nebulizers that I will no longer have to do for my lungs. The main things that I can do now that I couldn't before are physical activities (that is after I heal completely) but even now I can walk, dress, shower and all the little things without getting winded anymore.

Q: Heather Renae Schafer -Do u feel like a totally healthy normal breathing person now???A: Not quite yet but I feel amazing compared to what I did on a day to day basis before hand. I'm confident as I completely heal that feeling will be even more so. Q: Taylor Eames -Jamie, just curious, but what were your PFT's like before the transplant? A: The day I was admitted to the hospital on August 26th with my old lungs my PFT's were 25%. 18 days post transplant they were 66%, this is a great number and as my lungs stretch and expand to fit more, the more I use them my lung function will continue to increase over the next 9 months to a year when I will most likely peak. There's no way to know what that peak will be but it could even reach 100% and beyond. I think I answered all questions I had been asked. Please don't hesitate to ask more if you think of them. I'm willing to share my story to bring awareness to CF as always and organ donation. Thanks again and always for the continued love support and prayers along the way.

Friday, March 21, 2014

For those who are friends with me on facebook know I was listed for transplant on January 20th. I had been in the evaluation process since June of last year and with my lung function dropping to an all time low of 22% my doctors thought it was the right time to list me, so I finished up the testing while I was in the hospital for 18 days and was listed the day I was discharged. When your listed for transplant your given a allocation score which determines where you are put on the list, the higher the score the more urgency for transplant. Currently my score is 33 putting me lower on the list. As my health changes that score can be changed to fit the status of my health whether it gets better or worse. The doctors felt it was time to list me because over the past year with every hospitalization I have not been able to bounce back so to speak, and my lung function hasn't been going back up like it use to. Also because I am still semi healthy which makes me a good candidate. I passed every test on every other part of my body that they run! Being listed for transplant doesn't change my day to day life with CF at all, I still have to do everything to stay as healthy as possible as I always have.

So many don't know how to take this news of being listed for transplant. Is it good or bad? There is really only one answer that I feel fits. It's bad that my health is at the point that I need to be listed, but it's good that I have that option available to me. It's not where I wish I was in my journey with CF, I don't think anyone ever wishes to be here. But non the less this is where I am at in my journey now.

My journey with CF has never been easy so to speak, but it has never been harder than the last few months. I mean that's pretty normal considering it's a progressive disease, but that doesn't make it easier. You can only prevent and prepare so much for the hell that comes with lung failure. In the past it has been fairly easy for me to adjust to me new levels of function as they dropped, because it was usually a slower process and my body acclimated to it far before I even realized it had happened. That is not the case in my most recent decrease in function and new normal for me. To be completely honest I'm not adjusting well at all. The truth is I will most likely get much worse and suffer much more before being transplanted, if I am lucky enough to get that call. The truth is I could die waiting as so many do. That's not a new revelation in my story, because in fact without the opportunity to be listed and given a chance, my life would likely be taken because of CF, I've always known that. And to all those who say you never know when your going to die or why, yes that's true, but I have always been more likely to die from CF than anything else. Anyways death is another story. What I'm not dealing well with is the worsening in my days, my struggle to eat, and on days when I'm really bad the liberty of being able to bathe myself being striped. When getting dressed to go out is more of a chore than it's worth to go out, when I can't stand to wear a bra because it constricts my chest to much and makes it hard to breathe. There's not one thing to pin point that makes it harder, its a bunch of little things that add up. These are the things you take for granted the ability to do on your own until that ability is gone. It's a hard pill to swallow. It seems I have more bad days than good more recently which is hard and wearing on my usual positive attitude. I think the hardest part is having a great day and then feeling like death the next day. Also not being able to rely on my body when I need to make plans for future events, always being afraid I'm going to have to cancel because I just can't muster up the energy or feel like I'm drowning in my own lungs. Plus this winter has sucked the life out of me! (yes I'm going to blame my problems on the worst winter in Michigan history, sue me!) I can't do nothing because it's been so fricken cold, I can't even breath when I go outside, let alone stay warm, or do anything! So I'm hopeful for a better spring and summer.

As hard it is, it's okay. I've always been the type who needs to feel my emotions and work through them on my own, I don't want medication to deal, I have been given that option, and some need that I totally understand that, but not me. I need to feel the lows to truly appreciate the highs! I need to break down once in a while, or a lot for a while, and I need that to be okay. After all I'm only Human.

Tuesday, December 17, 2013

CF hurts. That is the one thing I wish people knew or could understand. It hurts physically, emotionally, and spiritually.

Let me start with the physical. I ache every single day. Imagine coughing so hard your whole body tenses and hurts, so hard that you pull muscles and even crack ribs. So hard you get an instant headache. So hard you are afraid to eat for fear of only throwing it up later. So hard you can't control you bladder and pee yourself or even worse poop yourself because the meds that are suppose to control that aren't working right either. And now you have to clean yourself and whatever else you may have messed on all while trying to catch your breath from the coughing fit that caused it all. Imagine every single breath you take hurting, hurting so much you take shorter breaths which only make matters worse and you have to use O2 because your stats drop and your heart rate climbs. Now imagine doing this several times a day. It all might not happen everytime I have a coughing fit, but it hurts everytime I cough. I also have arthritis and osteopenia caused from CF, which causes more pains else where. I take ibprophen twice a day to help with the pain, and when I pull muscles and it gets real bad I have to take muscle relaxers and stronger pain meds.

Let's move on to the emotional. I break down more than I'd like to admit. Those coughing episodes I just spoke of are exhausting. I'm a mom and wife, although lately I'm not very good at either. I sleep about 12 hours a day if not more. This is because of 2 reasons 1. My body physically requires more sleep to breath than most. 2. On top of that I also have narcolepsy which causes excessive sleepiness. I do have a medication to help me stay awake more often, but that causes weight loss I cannot afford to lose. Not to mention imagine having energy to do things but your body failing you at every attempt to do things, you your stuck with all this energy to do nothing or fight your body doing so. So I don't take the med to keep me awake. Colton hates how much I sleep. So I'm left with the guilt of sleeping away my time with Colton that I know is limited because he is growing up so fast. Then there's the hurt of not having enough energy or air to go outside with him and play in the snow, make snowmen, go sledding. So I watch out the window and cry while he does these things with his dad or my mom. I'm also riddled with guilt of not being a good housewife. Brad works everyday at an unthankful job to provide a good life for us, but then he comes home to do the work I should be doing. Cooking, cleaning, laundry, all the things I use to be able to do. He does these things without complaint and completely forgiving to me for not being able to all while helping me to try and stay healthy. He calls everyday to check on me and worries about me relentlessly. I'm ashamed to say I'm not always nice to him. I'm terrible at being empathic to him or anyone really that doesn't have a grave disease when they are sick. I just think must be nice to only have a cold, to wake up and all that's wrong is your back or head hurts, must be nice to know after a while you'll be better and back to your life. I don't have that luxury as many don't. So here I am feeling bad for not feeling bad! Well sometimes I don't feel bad about not feeling bad. But for Brad I do, because I'm his wife and he should be able to complain to me without feeling like I'm just gonna tell him to suck it up, which I have said before. I break down the most when I'm sick, when I'm sick I get scared, when I get scared I cry, yell, and have been known to throw and break stuff. I'm scared I'm going to die, I'm not scared of dying, I'm scared of what my death will do to my family and friends, most importantly Brad and Colton. So I fight, when I feel like giving in when this disease is ravaging my body I fight, when I think I can't do another treatment I fight and do it anyways, when I'm covered in my own body fluids and want to scream, I say fuck you CF and I fight. I am almost always emotional drained from the battle that goes on between my body, my heart, and my disease.

Last but certainly not least is my spiritual well being. I was raised on Prayers, I am living proof to the power of prayer. I believe in God and I believe Jesus will come back for us all one day. My spirituality has not always been strong and I go through times of wavering in my faith. I think it's natural with all I go through to have those seeds of doubt sometimes. Then Colton will do something so profound I can't doubt Gods plan for me and my family. It all wears on me like a heavy cloak I can't take off, like I was cursed with this burden and I must carry it to my death. I don't know His plan for my life and more often than I'd like to admit I ask why, that answer has not come yet. Or maybe it has and I missed it. Either way I just continue to pray for myself, that I may be worthy of His kingdom when my time comes.

I'm sorry if this disappoints readers who are use to my usual positive attitude about life and CF. This is the truth of my existence right now and I will always be honest about that. I'm having bad days but it's not a bad life, and when it gets better I'm sure I'll have a more positive look on it again. It just gets hard sometimes to always keep that smile when the truth is all I want to do is cry.

Tuesday, July 16, 2013

As I wrote about in a blog back in September I have been seeing the transplant doctor at my hospital in Grand Rapids, Spectrum health. They have been following my progression, and for a while it was really unchanged. After January of this year it did change a little bit. I have not bounced back from a couple CF exacerbations like I typically do. Leaving my lung numbers to stay in the lower 30's, and also having more symptomatic signs of lung failure. After a couple months of still waiting to see what would happen, if I might bounce back up some, if it was just taking longer than usual, I decided that although I was feeling better, it still wasn't my baseline. Dr. Gergis had told me that if that was the case it might be best to start the process of being evaluated to be listed for a double lung transplant. There are a few more things other than just my lung function and symptoms that are leading us in this direction, a few being my weight (or lack there of), my increasing resistances to antibiotics, and increasing need for hospitalizations. So next week I will start the process of evaluation. This includes to start with meeting the whole team including surgeons, nurse coordinators, and pharmacy staff. A financial run down, where they go over my insurance and what will be covered. Then there is clinical tests such as PFT's, 6 minute walk, blood gases, right heart cath, echocardiogram, and psych. evaluation. After they gather all this information from my body and me the doctors compile and review it to decide whether I am indeed a good candidate to be listed for lung transplant or not. If I am and I decide its the direction I want to go and am ready they can list me. If I was listed the way my health is now I would likely have a low allocation score, or could even be on the inactive list. The allocation score is the system they use for lung transplants, the higher your score, the sicker you are, and higher on the list you are. The benefit of me being listed even though I am not sick enough to need lungs just yet, and would be listed with a high score or as inactive, simply put, being ahead of the game. If I suddenly became very ill and needed lungs it's much easier to increase my allocation score moving me up the list, rather than while I am sicker going through the process of being listed then or even in an emergency setting. I could also refuse lungs at anytime if
they were offered and I didn't feel I was ready. Whether I will be listed I don't know, am I willing to take that route need be. Yes. There are also other things that will be taking care of before I will be listed, those things are terms that I have personally. Those being my family being ready for it also. Colton is very anxious about me even seeing the transplant doctor, so me being evaluated has been a touchy subject for him. He knows I can die from CF and he knows I could die with a transplant and that rightfully scares him. I have spoke with the nurse coordinator at clinic and they are working on getting me some resources for him, this is new to them, having a patient that is young enough (because they are a new transplant facility) to have a school aged child that needs the support also. Thankful they can reach out to the Helen DeVos Children's Hospital for those resources for Colton. In the mean time I still fight CF like hell to keep my own lungs! As much as they suck and hate me and I hate them I'd still like to keep them as long as possible.

Monday, June 10, 2013

I don't know if you've seen or are following the story of Sarah Murnaghan, 10 year old cystic fibrosis sufferer who is dying from CF. She has been on the pediatric list (12-) for lung transplantation for 18 months and recently her parents waged a media war and petitioned to get her also listed on the adult list (12+). They achieved what they wanted and she was placed by court order on the adult list. You can read media reports on it here, here, and here for full details. For weeks now I have seen her story shared all over my friends facebook pages, I read all the articles that I seen posted and followed her story the best I could. Now let me say a couple things before I state my opinion on this topic. I do not pretend to be an expert on the subject, I know what I have read through the media about her story and about lung transplants through UNOS, Gift of Life, and other peoples experiences with it. Opinions are always going to vary and especially on hot topic issues like organ donations. In fact my Mom and I disagree on this case. Putting this into words has been a challenge for me over the last couple days, so bare with me if my thoughts seem jumbled or not put together.

I completely disagree with Sarah being placed on the 12+ list based only on a court order by a judge who has no expertise in the field, instead of a panel of doctors and experts on organ/lung transplantation. There are a few reasons I believe this and let me just start with the one that to me seems so obvious, her life is no more valuable than the person that might not get lungs now because she was put above them. No one persons life is more valuable than another. Now I know people are moved above others all the time on transplant lists, but that's based on medical necessity, not because they got court orders to be there. I can understand how that might sound harsh. Are children more precious? Absolutely! I am a mother so I can speak from a parents heart. If it was me I would want everything done to save my child also, but I could not do so knowing that it could come at another child's life. Which in her case it very well might. Could you look another mother in the eye and say my child is more worthy than yours? I could not. She was on the top of the pediatric list where she rightly belonged, and although they speak of it as the adult list it is 12 and older. So there are deserving children that are just 2 years older than her on that list as well, not just adults. The rules for the difference in pediatric and adult were set in place for clinical reasons by many doctors and experts in the field to be as fair as possible for everyone. There could be more complicated issues with a child being transplanted to young, than with an adult and that's why the rules stand as they do. Another issue I have with this is they will most likely have to modify adult lungs to fit her, which this is practiced in adult to adult transplants too, but I can't imagine to the extent it would have to be to fit a 10 year old. Why shouldn't a person who is just as sick but is a better fit get those lungs? If there was no one to fit them by all means try to make them fit for her or a smaller person. I believe the person that has the best predicted outcome based on need should get them first. Adults generally have better predicted outcomes, so should we start saying children get precedents simply because their children and it's to sad to watch them die? Another perspective is that even though adults are grown they are someone's child too, for a parent I don't think it hurts any less to watch you 20-30 year old child die any more than it would if they were 10. Some of those adults listed may also be parents to children themselves, do their children deserve to be parentless at the expense of another child's life. I just really don't like the way they went about getting what they wanted, it seemed very temper-tantrum-ish to me, Had this decision been made by experienced people from the UNOS/OPTN than I might have a different opinion. After review today they have decided that the rules will stand the way there are, but will start to review some children under 12 on a case by case basis, you can read about that decision here. There is a couple articles that also explain things from a different perspective that I thought stated pretty much my thoughts on it as well you can read those here and here.

It's not fair, CF never seems to be, nor is it fair to need to be on a transplant list. I truly wish nothing but the best for Sarah and her family, have and will continue to Pray for them. If you want to do something to help 1. Become an organ donor 2. Donate to CF research so we can find a cure so there's not a need for us to have lung transplants!

Sunday, May 12, 2013

I have talked in other blog post about certain signs to me that I may need to go in for a clean out. Being tired more, not being able to keep up with household chores, getting short of breathe faster with things that don't normally make me short of breathe are some. Then there's startng to need O2 more than just at night, Brad telling me I am moaning at night, I apparently do this more frequently when I am close to a clean out. Now there is a new factor for me, Colton has started to get clues he picks up on as well that I might not notice, and tells me "Mom I think it's time for a clean out!" in his matter of fact way. Seems theres never a "good" time to go in, I mean to avoid it at all cost is the goal, but that just doesn't happen in my world. So when I start to think about it and when it would be a good time to go in, sometimes there's a time period where nothing major is going on that I can just get put away and get better for a few weeks. But most the time CF's timing is really crappy!

You get where I'm going with this don't you?!? It's that time all the symptoms are there, and worst of all I've had to wear my O2 almost all day every day since Friday. So I'm calling clinic tomorrow morning, they will probably offer oral anti-biotics, I will decline because 9 times out of 10 they don't work and I don't have time for that! I usually just tell them I need Iv's and they say "okay you know your body better than us" they set it up and I'm off and running for my 3 week clean out. So last time I was in in January it was horrible timing because Janet was in the worst battle fighting cancer. This time around it sucks too! My Great Strides for CF walk is Sunday May 19th! When I get a clean out I do at least 2 weeks in patient, that leaves me in the hospital the day of my walk one week from today, so my plan of action may change up a bit this time. I may go in and get started and then finish up on home Iv's, or I may go in and stay my 2 weeks and take a LOA (leave of absence) for those few hours that day than go back and finish up my stay. Either way I just can't see myself missing my walk, I am the chairperson for this walk, I do almost all the work for it, and am pretty much the only one that knows how everything gets done that day! Would it go on and be as successful without me there? Yes I'm sure it would, but i just can't stand the thought of missing it, it's my baby! Either way it will be fine and life will go on, but as always I have to do what's best for my health.

Saturday, May 11, 2013

Mom and I on the night of a lifetime! At P!NK's Truth About Love Tour concert.
One of thee best nights of my life!

Tomorrow is Mothers Day, the day we celebrate our Mom's for all they are to us and do for us, also the day I get celebrated for being a Mom.

Sadly I only get to celebrate my mother in law in memory, I sure do miss her. I swear I heard her come to my house the other day. The way she always did, opened the door and calling out "Hello" I would stop my therapy (because she always stopped by around the same time of day I did my treatments), say "Yeah I'm home" she usually had something to drop off, to tell me, or just nothing really. I could have swore I heard her last week, even stopped my therapy before I realized, that wasn't possible, that she was gone. Or trying to buy a watermelon at the grocery store, there I stand with wet eyes, people probable thought I was crazy. But the thing is she always brought me watermelon, and it was always really juicy, sweet, and delicious! I don't know how to pick out a watermelon, I had to have my Mom do it. It's the small moments like that that hit the hardest. I miss her and I miss those moments. She was no doubt one of thee best Mom's I knew and was just as great of a mother in law. Happy Mothers Day Janet! I bet it's a great celebration where you are.

Having lost Janet and worse yet watching Brad lose his Mom has given me an even deeper appreciation for my Mom. I have always appreciated my Mom, but when we lost Janet I almost felt guilty because I still have the luxury of having my Mom, unlike Brad. Aside from Colton and Brad my Mom is my world. She is ALWAYS there for me regardless of what I may need. She is more than my Mom she is my best friend. I can't imagine what it must have been like to raise me. Being giving a gift of a little girl and then being told she wouldn't live through elementary school, all while raising my older brother. That must have been heart wrenching. I only know what it's like on this side of CF, although I know what it's like to be a mother, I don't know what it's like to be the mother of a CF child. I can only imagine, because seeing Colton sick when he was born and almost losing him, and then when he had to have his appendix removed, and surgery for his broken arm. But once Colton got through those things we got to move on with our life, he got healthy again and gets to be a healthy child. But my Mom and my Dad had to work so hard to keep me healthy everyday, had to watch me get sick, and spend many nights in the hospital. My dad was the only one that worked, they had one vehicle. My mom's journal has writings in it about not being able to get to the hospital to see me for 3 days! Can you imagine leaving your baby in the hospital in the hands of the nurses and doctors for 3 days without seeing her?! My Mom had to, they didn't let you stay at the hospitals with your children back then, she had my brother to take care of, and at one point there was a snow storm, and the one truck they had, the lights had broke. I can only imagine what trying times it must have been for them. But when I was healthy and home they took care of me, but they also let me be a kid and raised me as if I was going to live to be old and grey. No special treatment, no pity parties. I had my big brother to play with and when we weren't fighting we were best buds, we'd take turns playing Cars and Barbies, he'd play Barbies with me for a bit and then we'd play cars and trucks out on the sand hill (I think we played cars and trucks more though)! I can't imagine what it was like for him to have to deal with having a sick sister. Later in life we still play with cars and like to go to the sand hills and play in trucks, only now it's the big kid toys! My Mom was always so good at playing dolls and Barbies with me. I remember when I was in about 1st grade and I came home from school and she had all my Barbies (I had A LOT) sitting up around the dinning room table, with all there hair combed and dressed nice. I loved that. She would do the same with my Cabbage Patch Dolls too (I had A LOT of those too) she'd let me take pictures of them all nice. She taught me to blow a bubble with my gum. I had a great childhood. My parents didn't have a lot and we only got toys or gifts on holidays and birthdays (and not like today for EVERY holiday only Christmas, Birthdays and Easter!). But when those days came they were the best ever! I remember when I got in school my Mom went back to work at nights, so Dad took care of us at night and Mom during the day if we weren't in school. I also remembered I hated it, I wanted my Mom!! I was a Daddy's girl too though maybe I'll write about him on Fathers Day. She could be a mama bear too and came to my defense on more than one occasion. One I remember well, I was in the hospital and only about 10, we shared rooms with others at the time. I was sharing a room with a baby, the mother had left me, her other daughter who was maybe 8 and the baby in the room alone to go to the cafeteria. While she was gone her older daughter was going to take the baby out of the crib, I thought she shouldn't do that so I called the nurse. When the mom got back to the room she pretty much attacked me verbally and told me I had no right to tell her daughter what to do. My parents had left not long before all this happen, and they lived about 1 1/2 hour away from the hospital, no cell phones back then, so I had to wait until they got home and called me to tell my Mom what happen, she was not happy and after speaking with the nurse decided that because it was late they would deal with it in the morning. Well when my Mom got there she laid into that other mom like nobodies business, giving her the 3rd degree for verbally attacking me for trying to keep her baby (who was hooked up to all kinds of stuff) safe. I never felt so loved and protected in my life! We promptly moved to a new room. You don't mess with my Mom and you sure as heck don't mess with her kids. My parents always told us, if something happens and you tell us and it's the truth you'll have our full support, and they did! If we lied though and they found out after having trying to defend us, we were in hot water! I guess I'm rambling now, but I truly had thee best Mom growing up. Even through my teen years we stayed very close and she gave me some great advice that stuck with me and made me the wife and Mom I am. She doesn't give herself nearly enough credit sometimes. In the words of P!NK "She's F*#@%^g Perfect, to me" There's only one thing that's better than having her for my Mom, and that's having her be Colton's Grandma!

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My name is Jamie I am a wife to my wonderful husband Brad and mother first and for most to my adorable 7 year old son Colton. I live with and fight CF everyday, it is part of my life but I try not to let it define my life as hard as that is! I love animals, we have 2 dogs, and 3 goldfish. I love cars, muscle cars in particular, I really like anything that has a motor and you can have fun with. I am the proud owner of 1969 Chevelle, I love this car and I am enjoying making it the car of my dreams, I am building it so I can drag race it. I may like the fast lane, but my husband is an outdoors man who loves to fish and hunt, I enjoy the fishing too not the hunting. Colton is not your typical 7 year old, he's so smart (I know every parent says this)! He loves cartoons, riding his snowmobile, playing with mom and dad, and hanging out with his grandparents. He is the reason I fight so hard!
I love Nicholas Sparks and Jodi Picoult books